When the Baby Breaks:
Exposing the Nerves of Neonatal Bioethics
by:
Jaimie Smith-Windsor B.A., University of Victoria, 2005
A Thesis Submitted in Partial Fulfillment of the Requirements of the Degree of
MASTEROFARTS
in the Department of Political Science
© Jaimie Smith-Windsor (2011) University of Victoria
All rights reserved. This thesis may not be reproduced in whole or in part, by photocopy or other means, without the permission of the author.
When the Baby Breaks:
Exposing the Nerves of Neonatal Bioethics
By
Jaimie Smith-Windsor B.A., University of Victoria, 2005
Supervisory Committee
Dr. Arthur Kroker, Supervisor (Department of Political Science)
Dr. Warren Magnusson, Departmental Member (Department of Political Science)
Supervisory Committee
Dr. Arthur Kroker, Supervisor (Department of Political Science)
Dr. Warren Magnusson, Departmental Member (Department of Political Science)
Abstract:
Neonatal intensive care is an ambiguous and anxious medicine with troubling un/intended consequences. The causes and increasing prevalence of premature birth, available histories and the establishment hospital-based neonatology are presented, with a particular focus on American and Canadian contexts. The thesis traces neonatal medicine’s unlikely swerve through early-American freakshow culture, considers the influence of the eugenics movement, and spans decades of haphazard clinical experimentation with premature babies. Of particular interest is the complex nexus between neonatology and disability and what new technologies reveal about deep-rooted human desires and fears about life, death and disability. Incorporating statistical data, policy analysis and clinical trends with personal, parent and practitioner narratives leads to provocative ethical questions about neonatology’s growing powers. This thesis draws on critical disability theory and contemporary critical theories concerning technology, and builds towards a conception of disability that is separate from the medical paradigm, somewhat unorthodox, and certainly post conventional.
Table of Contents:
Supervisory Committee……… Page ii Abstract………. Page iii Table of Contents………. Page iv List of Abbreviations……… Page v Acknowledgements………... Page vi Dedication………. Page vii Preamble……… Page viii Introduction……….. Page 1 Against the Grain: The Evolution of Neonatal Intensive Care……… Page 11 Miraculous of Macabre? Exploring Ambiguity in the NICU……….. Page 67 Disability & Neonatology: A nexus, a Hauntology, an (Im)Perfect Crime……….. Page 106 Conclusion………. Page 136 Bibliography……….. Page 145
List of Abbreviations
AAP – American Academy of Pediatrics
APCFN – American Academy of Pediatrics Committee on the Fetus and Newborn ART – Advanced Reproductive Technologies
ART – Assistive Reproductive Technologies BPA – Bisphenol A - phthalate
BPD – bronchopulmonary dysplasia CP – cerebral palsy
CPAP – continuous positive airway pressure CPS – Canadian Pediatric Society
DEHP – di(2exylhexyl) phthalate – plasticizer DNR – Do Not Resuscitate
FDA – United States Food and Drug Administration IPPR – Intermittent Positive Pressure Respiration IVH – Intraventricular Hemorrhage
MEHP – mono-2-ethylhexyl phthalate – plasticizer NEC - Necrotizing Enterocoltis
NICU – neonatal intensive care unit NRT – New Reproductive Technologies PDA – Patent Ductus Arteriosis
RDS – Respiratory Distress Syndrome ROP – Retinopathy of Prematurity SCN – Special Care Nursery TPN – total parenteral nutrition
Acknowledgments:
Dear Quinn,
You’re always asking me to tell the story about when you were born. There are many ways to tell that story and my thesis is just one way among many. Your story begins like this…
We were driving up to the Comox Valley on Vancouver Island when I felt a knock knock knock inside my tummy. We drove to the hospital and the doctor said, “stay put”. But you were determined to be born right there and then and so you were born – 105 days early. They gave you a breathing machine and they put you in an incubator. We touched your hands named you Quinn and a doctor flew you off in the night in the belly of a helicopter. Someone gave your dad two grainy Polaroid photos of you. The next morning we caught a ferry and came to meet you in the special care nursery. There you were, pink, kicking, swimming in an oversized diaper. When I spoke to you, you turned your head and tried to peek. One day your eyes opened and they were deep and dark, and I knew you’d be our brown-eyed girl. You had such long fingers and boy could you kick! You were as perfect then as you are now. One day one of your nurses wrote on the white board beside your isolette. They were beautiful words;
For every blade of grass, there is an angel who bends over it and whispers: grow, grow.
I loved what those words spoke to me and how they gave me purpose and peace and patience. I was so proud to be your whisperer. So many others were too. How could I ever have believed then what I know now, eight and a half years later? You have become my angel and I, your blade of grass. I learn so much from you each and every day. You are a very good teacher, so keep whispering to me, I’m growing in ways I’ve never imagined just by being your mom. Thank-you.
I’d like to thank you for giving me permission to write about some of our experiences. It’s important to ask questions about why we do the things we do.
I need to thank your brothers, Tazmin and Sullivan, too. They enchant me every day with their clever antics and boundless energy. They really are tremendously inventive and patient. I’m especially thankful they invented “jumpy school”, which they’d play on the bed in the office for hours while I worked on my thesis some days. Without “jumpy school” this thesis would not have been possible. Of course I’d like to thank your grandparents, my mom and dad, Gren and Marg. I couldn’t have asked for more supportive and loving parents. As you know, they are very special people. They’re steadfast in their friendship, values, encouragement, and faith in me.
Quinn, I know you haven’t settled on what you would like to be when you grow up. Take your time – I know you are going to have a magnificent journey! I know this because of the way you imagine the world ahead of you – full of possibility, ready for your invention. On that journey, from time to time you’ll meet people that both inspire and challenge you. My thesis supervisor, Dr. Arthur Kroker, has done that for me. For his constant encouragement and his tirelessly innovative mind I will always be gracious, awed, and appreciative. To Dr. Warren Magnusson I owe similar appreciation, for his patience, candor, rigor and for insisting that I move more patiently, more carefully, more methodically.
Finally, I’d like to thank your dad, Al Osaduik. He’s so unwavering and understanding, always. All those years ago, we waited and waited and waited and whispered over you together – and I fell so deeply and forever in love with him. And with you. And with our whole delightfully unexpected future.
Dedication:
To all parents of preemies who have spent time in the NICU. You will understand my often unsettling questions better than anyone.
In Loving Memory of:
T.A.H. (2003) L.L. (2005)
Preamble
How soon is too soon? Is there a limit to viability? When is it appropriate to withdraw life sustaining medical treatment from a premature baby? What happens when the baby breaks? It’s one thing to provide unequivocal answers to troubling questions. But it is quite another thing entirely to watch the smallest of babies gasp for breath, or to watch a tiny baby swell with sepsis, or to watch a baby crash, for the last time. It is quite another thing entirely to touch the precariousness of it all and know that uncertainty is the only principle. This is a story about such precariousness and immense uncertainty.
January 31, 2003: The morning you were born, I was doing inventory in the kitchen - weighing spices in the pantry. Marjoram: 1200 grams. Rosemary: 175 grams. Nutmeg: none. And then you. Like Anise: both fruit and seed. New Born Female: 700 grams. We named you Quinn before they wheeled you away in a transportable plastic incubator and flew off in the night. This is an intimate history of premature birth, and of crossing boundaries:
Yesterday a nurse told me that I could change your diaper for the first time. I had to hold my hands together, like this, to stop them from trembling before I held your ankles between my thumb and my index to lift your legs. I didn’t want you to feel my hands shake. If they trembled you would know that I was afraid for your smallness. My fingers shook anyways, twitching against you, like the wings of a fledgling sparrow, far too young for flight.
It’s about the birth of a cyborg. Who gives life to whom? The machine to the baby? The baby to the machines?1
Today a new nurse tells me that I can hold you in my arms for the first time. The new nurse and two more people in muddy blue scrubs unplug and transfer the limp coils of your ventilator from there to here, plugging the gasping end into a plastic socket in your throat. The breath is forced in, your lungs inflate, and you twitch against my bare chest, twice. But you begin to breathe, again. Or the machines breathe. Or both. The new nurse hovers around us. She pulls your plastic tubing taut around my neck, tapes it down to my shoulder, my thigh and my knee before she allows it to trail off into some machine. There are other tubes, too: more medical spaghetti, bound to my limbs with peach colored surgical tape.
And it’s about consequences and unintended consequences:
Our skins feel warm and moist against each other, except for the places where electrodes are fastened to your skin, with glue. My fingers avoid the place where the nurses’ finger caught and pulled the electrode from your skin, tearing off most of your right nipple.
It’s about the expropriation of wombs and moms by other means:
My nipples, chaffed and cracked from the relentless kneading of an electric breast pump, freely weep milk onto your feet. You fill the valley between my swollen breasts, peek at me through swollen eyelid slits. It is the first time we have looked at each other, our gaze uninterrupted by the plastic wall of an incubator.
Yours ears, without cartilage yet, crumple against your skull. I unfold them with my fingertip; align the tips with your eyebrows, the lobes with your upper lip. There are your eyebrows, curling on your brow, like fallen eyelashes, waiting to be wished upon. I wish and wish and wish, and wish. I can scarcely see your eyelashes. New blood from the newest transfusion has turned your skin a bright shade of blood. Last time, when they pumped new blood into a tube in your ankle, I called you, “my little pimento”. I didn’t think that anyone had heard. But the next day, there it was, draped over the incubator: a handmade quilt with a cocktail olive motif. And I laughed. And I liked the way that laughter sounded in a nursery full of soundless babies and all that living grief.
It’s about equivocal codes of life and death:
Now I read to you a story by Dr. Seuss about Whos who are resilient little people with big hearts. A big elephant has just lost a clover to a sneaky buzzard when a number of alarms sound in the nursery. Baby 6. From across the nursery, the respiratory technician yells: “NO CPR!” This is the first DNR ritual tonight - Do Not Resuscitate. He crosses the room, silences the alarms, switches off the machines. One by one by one: ventilator, oxygen, TPN, incubator, monitors, eight intravenous infusion pumps. The nurse withdraws the tubes, the leads, the sensors, the needles. Beside us, in spot six, another Mother’s baby dies. Another baby dies. This time, there will be no resurrection. There’s a different code for that ritual. And I am taped to a rubberized rocking chair, taped to you, bound to these gasping machines. I cannot leave when another baby’s mother comes to wail good-bye. So I keep telling you my story about little people called Whos amidst the shrill soprano screaming.
And it’s about irony:
A sour but resolute kangaroo has pledged to protect the smallish Whos.
“From sun in the summer and rain when it’s fall-ish, I’m going to protect them. No matter how small-ish!”2
And the baby kangaroo, from her pouch says, “me too!”
My words shook the way my hands did when I lifted your wish-bone legs to change your diaper for the first time. And I try not to see the other Mother’s tears caught between her cheek and the invisible shell of an incubator that hides no grief between us. In this moment I know that fiction makes promises to that not every Mother can keep.
That was then. And this is now. Nearly nine years has passed since the near-fatal birth of my daughter. The sentience of that experience – her birth and subsequent rescue – is more vivid than anything else I know. Preemie parents will tell you the same. The NICU never leaves you. It haunts.
The aftermath of the NICU may sound a lot like this: Cerebral palsy Periventricular lukomalacia Spastic quadriplegia Epilepsy Hemangioma Bronchopulmonary dysplasia Retinopathy of Prematurity.3 Or like this: Social Dysfunction Low self-esteem Behavioral Problems Sleep Disorder Sensory Hypersensitivity Cognitive Impairment Savant traits Low IQ
Abnormal Reactions to Pain and Danger Autism or “autistic traits”
Motor skills impairment
Feeding disorders; failure to thrive
Digestive problems; reflux, constipation, g-tube feeding Gall Bladder disease
kidney stones bedwetting
Osteopenia (rickets) precocious puberty
ongoing lung problems: severe asthma Metabolic Syndrome
cortical blindness
Obsessive Compulsive Disorder Depression, anxiety, bipolar disorder Delusional thinking: Schizophrenia Perseveration Seizure disorders
dental issues
vocal cord paralysis4
Then there is the aftermath of intakes, regular assessments, continuous monitoring reports, referrals, and consultations, appeals for services, surgical fixes, therapies and constant medical surveillance. Intervention after intervention. In our house, they’re categorically filed in a four-tiered metal file box that acts as a monument to the paradigm of perfection and a purely medical model of disability. Annual assessments and reports have become a meticulous history of defects and deficits. They form a library of deviation from ‘normal’ childhood development; each intervention comes with a recommended ‘fix’ or improvement. This is how the medical model of disability sounds, paring individuals down to their well-monitored and documented deficits:
physiotherapy
occupational therapy
speech and language pathology orthopedic surgery neurology cardiology neonatal follow-up psychology nutrition
opthamology & orthoptics plastic surgery oncology developmental pediatrician audiology social work orthotics
daily living supports assessment assistive technology team
early childhood intervention team Otolaryngology
Community Living Pharmacy
Intensive Needs Pupil Support Services Specialized seating Respite Worker Advocate Home Care Bloodwork EEG ECG
4 List compiled from parent reports by Helen Harrison for presentation to the American Perinatal Association (2005)
Hepatic Hemangioma Repeat Ultrasound
X-rays Botox?
Surgery
All this because of a little bit of scar tissue. Neonates are haunted by both the residue of medical interventions and a panacea-effect of medical, surgical, pharmaceutical and therapeutic ‘improvements’. The paroxysm of medical and technological interventions available is astounding. The force of this fetish ‘to fix’ babies and children who have disabilities is dizzying. This has to do with the desirable notion of normalcy and the lengths that we go to try to contain, categorize, organize, cure and cull undesirable traits.
This thesis reacts to the incredible paroxysm of desires, medicine and technology that forms the event and aftermath of extreme prematurity and should be read as a meditation of pure uncertainty. As such, it cannot offer solutions to unsettling questions that rise, like specters from the often haunting events surrounding the birth of an extremely premature baby. Rather, it builds towards a conclusion that may be quite unexpected – a conception of disability that will have significant impact on the biopolitics of the future.
1
Introduction and Methods
When a baby breaks, it is an intimate matter of personal and public concern. This thesis responds to neonatal intensive care and extremely premature birth as both a personal and public matter. In part, it is personal narrative of my experience of giving birth to a micropreemie, the incredible story of her rescue and observations about ‘the aftermath’ of high-tech medical interventions. At times my story mingles with other narratives - those of practitioners, nurses, bioethicists, and other parents. In part these chapters follow an intellectual journey through the complex science of rescuing premature babies, while offering a commentary about babies with manufactured disabilities. It is also a historical sojourn into the origins and future of neonatology and medical progress. Underscoring all of these ‘parts’ is a recurring meditation on disability and normalcy. Rather than disassociating the terrain of personal experiences from the terrain of intellectual work, I embrace both, allowing private matters and public issues to mingle and enrich one another. My personal story and stories of other parents of micropreemies mingle with the empirical stories and data histories that comprise evidenced-based neonatal care, research and bioethics. In C. Wright Mills terms, intellectual craftsmanship is best formulated when personal troubles and public issues share space: when those matters having to do with personal life experiences are made public. “You must learn to use your life experience in your intellectual work; continually to examine it an interpret it,” he says.5
For, “the problems of social science, when adequately formulated, must include both [private] troubles and [public] issues, both biography and history, and the range of their intricate relations.”6
It is not my project provide answers to troubling questions, but to adequately formulate them, and, in doing so, contribute to a better
5 Mills, C. Wright (1959) p.196 6 Mills, C. Wright (1959) p.226
understanding of my own biography, clinical neonatal practice, bio/ethical dilemmas, modern medical progress, and the available models of disability. It is only then that one’s craft “has its chance to make a difference in the quality of human life in our time.”7
The core arguments of this thesis are that neonatology is an ambiguous and anxious medicine, that the consequences and unintended consequences of neonatal intensive care are troubling. The first section of this thesis swerves through the murky past, controversial present and unfettered future of neonatal medicine. Of concern is that preterm birth rates are rising, despite the overall improvement of maternal and fetal health, particularly in Canada and the United States. Of concern is that neonatology is highly experimental and leaves a wake of success and failure, promise and disaster. Secondly, this thesis elucidates the relationship between modern technology, bodies and medicine by blending accounts of the NICU from personal reflection, practitioners and bioethicists. The scene is erratic, uncertain, troubled, and often unfolds quite differently than the general public may think. Neonatal critical care is caught up in a technological drive to improve human reproduction, which has serious consequences for the future. Of particular interest is the complex nexus between neonatology and disability and the possibility that neonatal medicine conceals and reveals deep-rooted human desires and fears; it is as much about staving off death as it is about fearing disability. Incorporating statistical data and clinical trends with personal, parent and practitioner narratives of neonatal medicine and bioethics leads to the articulation of provocative ethical questions and concerns about neonatology’s growing powers. This thesis draws on some of the core assumptions of critical disability theory in order to expand current dialogue about neonatal medicine beyond a purely medical paradigm. At the same time, this thesis productively engages with critical theories concerning technology, specifically Martin Heidegger’s questions concerning technology and Jean Baudrillard’s twin hypotheses of ironic reversibility and the
The Perfect Crime. These discussions build towards a conception of disability that is quite separate from the medical paradigm. In doing so, this thesis lays the groundwork for engaging more productively with the concept of disability as it asserts itself in and through neonatal medicine.
For over fifty years, hospital-based baby rescue and the treatment of premature babies has been evolving, at once heralded, harangued, lauded and condemned, sensationalized, sanitized, publicized and, at times, wholly misunderstood.8 Sometimes neonatology is considered to be one of the most successful medical innovations in contemporary medicine. It has become a hallmark subspecialty in contemporary children’s hospitals. To others, it is considered to be “a vast, uncontrolled experiment undertaken without informed consent and with possible undesirable results.”9 In the eyes of the public, professionals and parents, neonatology is often polarized; it either fulfills a fantasy or is dangerously nightmarish. It might be apt to suggest that it is both. Certainly the evolution of neonatology has followed its own curious curve and ethos: innovations often preceding ethics, critical reflection and open acknowledgement of misadventure. Consider what neonatal bioethicist, John Lantos, says about the evolution of neonatology,
Scientific and technological innovation was so rapid that important questions about the safety and efficacy of interventions could not be conceptualized until the scientific and technological innovations stimulated our imaginations to ask questions. The process of answering questions created new technologies, new understanding, and new questions, which could be answered only by further technological innovation.10
In this regard, it might be quite accurate to suggest that we are constantly living in the aftermath of technological innovation and the wake of so-called progress.
8 Lantos, J. (2006) p.1
9 Maisels, J. quoted by H. Harrison (2001) p.59 10 Lantos, J. (2006) p.3
The first chapter of this thesis provides an intense exploration of rising premature birthing trends in the United States and Canada, a trend that is seemingly against the grain of steady maternal and pediatric health improvements. The United States Department of Health and Human Services and the Centers for Disease Control and Prevention, along with the Public Health Agency of Canada report that preterm birth rates are rising. Prematurely born babies that wouldn’t have survived generations ago, now routinely survive. There is little doubt that neonatal intensive care has dramatically improved the survival of critically ill, small and premature babies.11 For instance, since 1960, the neonatal mortality rate in the United States has dropped from 19/1000 births to 4/1000 births in the year 2000. There may be other correlative trends that are contributing to the rising prevalence of premature birth rates in countries such as Canada and the United States. This chapter explores some of the underlying causes of premature birth, while raising important questions. What is fuelling its growing prevalence? The technological imperative? Professional exuberance, perhaps? The expectation that neonatology will deliver on the rescue-fantasies of doctors, parents and society12? Are these highly skilled specialists [neonatologists] responding to needs, or are they creating needs to which they respond?13
The evolution of neonatal critical care has taken some surprising detours, not the least of which is the surprising turn the subspecialty made through early-American freak-shows before being professionalized in the hospital environ. Ironically, the professionalization of neonatal intensive care did little to change a culture of controversy that haunts the contemporary practice of rescuing impossibly small babies. A case could be made that neonatology’s strange detour through sideshow culture is reflected in the high-tech environ of contemporary NICUs in the sense that neonatology is still a
11 Lantos, J. (2006) p.6 12 Lantos, J. (2006) p.5 13 Silverman, W. (1998) p.4
pioneering subspecialty that takes place on the frontiers of medicine. It is a wholly fantastical scene: spectacular, unrestrained and extravagant. But how successful?
Clinical innovations in neonatal medicine are often accompanied by catch-22s and haunted by medical mishaps, adverse events, and iatrogenic outcomes. Premature birth and aggressive interventions in neonatology leave a wake of babies with exceptionalities and unknown degrees of disabilities. Boundaries blur when social discomforts surrounding disability bleed into clinical care decisions in the NICU. What happens when social stigmas are reenacted in the NICU? What impact does the social problemetization or hystericization of imperfect babies have on the way medical resources are distributed? And what are we to make of the irony that modern medicine is simultaneously eliminating and manufacturing disabled babies?
Chapter two considers the abundance of miracle rhetoric and tropes of medical heroism that help to shape commonly held ideas about baby rescue. Miraculous accounts of neonatology are often at odds with the sober realities of extreme premature birth. It is rather under acknowledged and somewhat contrary to commonly held beliefs about neonatology that rescuing babies is often extraordinarily aggressive and highly experimental, painful, sometimes scientifically haphazard, and even horrific. The outcomes of some treatments are uncertain and sometimes the treatments themselves produce disabilities. Pediatrician and bioethicist John Lantos says, “In the past, cerebral palsy just happened. There was nothing we could do about it. Now it is associated, in many cases, with particular decisions about particular medical interventions that we can choose to use or to withhold.”14
The aftermath of neonatal medicine and the NICU often differs from the miracle rhetoric that fuels commonly-held ideas about neonatology, ideas that seem to stem from some heroic and nostalgic idea about modern medical progress. The residual effects of prematurity and high-tech interventions are astounding and may point
to critical flaws in the medical paradigm. What happens when the unintended consequences of aggressively salvaging babies surface and the rhetoric of miraculousness and heroism begin to unravel?
Extremely premature babies are haunted in multiple ways: by the residue of clinical experimentation and innovation, by the technological imperative, by regimes of overtreatment and strategic undertreatment. And, vice versa. Chapter three productively engages with Jacques Derrida and Wendy Brown’s notions of spectral asymmetry and hauntology in order to consider the ways that borderline babies haunt modern medical progress. Central to this line of questioning is the nexus of disability and neonatology. There are underlying social anxieties about disability that feed into the seductive notion that disability should somehow be jettisoned out of pregnancies and human destiny, altogether. We may be getting dangerously close to achieving this through neonatal medicine and the rapid implementation of new reproductive technologies, generally. Another possibility is that we will fail in this achievement. What if the more we pursue perfection (of human reproduction and bodies), the more it eludes us? Are medicine’s growing powers being subtly eroded by that which it cannot control? Are medical advances responding to or sustaining manufactured social problems in order to offer imaginary solutions? Are technology’s growing power, and our ability to master it, simply an illusion, veiled by the heroic ethos of modern medicine?
One of the many stories that neonatology has to tell is the story of “enslavement to a technological imperative”15
and the expectation that technology will perfect, cure, improve upon, or at the very least, normalize bodies. The technological imperative comes with no guarantee. There is also the possibility that the more we attempt to actualize our desires for normalcy, the more evasive they will become. Neonatology places technological determinism16 under the microscope by drawing on two of
15 Lantos, J. (2001) pp. 23-24
Jean Baudrillard’s hypotheses – the ironic reversibility of all things and the uncertainty principle. The nexus between neonatology and disability, reveals both.
Jean Baudrillard suggests, on the one hand, that through technology unfolds the possibility of creating a culture of extermination that he refers to as the Perfect Crime. If neonatology is any indication, it may also be that we are already living in the wake of the impossibility of the Perfect Crime. The closer we come to the realization of the Perfect Crime (perfection), the more impossible it becomes (imperfection). This is not unrelated to Martin Heidegger’s observation that technology is both a saving power and imminently dangerous. What if the more we strive to manufacture perfect (bodies, babies, pregnancies), the more perfection itself reveals itself as delightful hoax or a parody of human desires for normalcy? What if erroneousness is the surest thing that we can know about bodies? Neither of these hypotheses is mutually exclusive and the possibility that both are equally relevant to the essence of technology in contemporary medical culture underscores the immense uncertainty between technological and human destinies.
This thesis draws from some of the core assumptions that form the foundation of critical disability theory. First, critical disability theory assumes that disability is delightfully irreverent. Different and varied choreographies are simply part of human diversity, and ultimately part of human destiny. In this regard, critical disability theory assumes that an ontological and epistemic shift in the way we think about and socially produce disability is required. Secondly, critical disability theory assumes that the medical model of disability is outdated and that a new model of disability is necessary. Specifically, it relocates the ‘problem’ of disability away from particular impairments and relocates the ‘problem’ in the realm of how society responds to particular circumstances. “Disability is not fundamentally a question of medicine or health, nor is it just an issue of sensitivity and compassion;
rather it is a question of politics and power(lessness), power over, and power to.”17
Thirdly, critical disability theory shares and seeks out theoretical affinities with other critical theories in a mutually productive way. For instance, explorations of postmodernist and post-structural scholarship contribute to the emergence of critical disability theory, and vice versa.18 In the same vein, feminist theory benefits from the integration of critical disability theory, and vice versa.19 Finally, critical disability theory moves towards institutional transformation and ultimately towards the development of inclusive societies by refusing the fetish of normalcy and challenging the hegemony of normativism at multiple levels. 20 What’s argued is that the medical model of disability is limited in its ability to accurately reflect the complexities of the lived experience of disability, in particular, the complex nexus between disability. By drawing from some of the core assumptions of critical disability theory a more nuanced concept of disability emerges that is beyond the prescriptiveness of the medical model.
Some critical disability scholars suggest that disability itself lends itself to the more equivocal underpinnings of the post-structural and postmodern intellectual movements. Indeed, this thesis treats critical disability theory as an emerging thread or ‘niche’ of contemporary postmodern scholarship and assumes that this niche, adequately explored, contributes to a better understanding of both disability and postmodern intellectual frameworks. One of the core assumptions of both critical disability theory and postmodern theories is that our contemporary context is underscored by uncertainty. And, it may be that particular experiences and moments reveal and crystalize things that are rarely and barely discernible, namely, the uncertainty principle itself. For instance, in moments when babies are born beyond the boundaries of possibility and during the subsequent steps that unfold after their precarious births, usual
17
Pothier, D. and R. Devlin (2006) p.2
18 Corker, M. and T. Shakespeare (2006) p.1 19 Garland Thomson, R. (2003)
certainties succumb to vast uncertainty. Objective ironies reveal themselves. In these moments, nothing is black or white. Ethical compasses spin wildly at each decision.
Critical disability theory invites multiple authors, multiple stories, dialogical conversations, autobiographies and personal narratives to contribute to the reconceptualization of disability beyond a purely medical model and apart from the medical paradigm. Critical disability theorists would suggest that neonatal bioethical discourse would be more relevant and productive by adopting a more participatory method of inquiry, one that includes interdisciplinary contributions and incorporates multiple and diverse voices, experiences and expertise. In an attempt to contribute to the existing body of neonatal bioethics and critical disability theory, this thesis uses mixed and multiple methods of inquiry. Blending statistical data and clinical research findings with personal, parent and practitioner narratives of neonatal medicine and bioethics leads to the articulation of provocative ethical questions and concerns about neonatology’s growing powers. This thesis draws on some of the core assumptions of critical disability theory. At the same time, it is productive to engage with critical theories concerning technology, specifically Martin Heidegger’s questions concerning technology and Jean Baudrillard’s twin hypotheses of ironic reversibility and the uncertainty principle. These discussions build towards a conception of disability that goes beyond the medical model and all that is implied with its prescriptive assumptions about disability and normalcy. Ultimately, this thesis lays the groundwork for engaging more productively with the concept of disability as it asserts itself in and through the high-technologies of infant rescue.
We know already that questioning builds a way21 forward for the intellectual imagination. We also know that by making private troubles public, the intellectual imagination is excited and there is a
chance to make a difference in the quality of human life in our time.22 Where medicine is sometimes incongruous with its own intellectual framework and scientific objectivity, Arthur Franks suggests that it “seems more useful to open up the discourse” than it does to offer guidance. 23
Ultimately, this thesis aims to open up discourse to greater complexity and questioning surrounding neonatology and disability and their complex interdependence. What is important is the act of opening up discourse about bodies and disabilities to their own complexities.
It is too much to expect philosophy to solve ethical problems24, just as we expect too much of ethics if we expect it to offer unequivocal delineation between acceptable and unacceptable moral choices, or definitive “rights” and “wrongs”. To search for ethical lucidity in the context of neonatology only reveals deep-rooted ironies and uncertainties about the limits and limitless nature of technology, medicine and bodies. What the philosopher’s task is, what the ethicist’s task should be, and what the critical theorist’s challenge is, is to commit to discourse, to build a way forward through questioning. As such, this thesis does not proffer clear cut answers to stated problems, but seeks to broaden the scope of existing discourse about neonatology, and, more generally, about the relationship between scientific progress, medical innovation, economics, human reproduction, bioethics, policy, and the Pyrrhic victory of neonatology.25
22
Mills, C. Wright (2000) p.226
23 Frank, A. in E. Parens (Ed.) (2006) pp. 69-70 24 Edwards, J. in E. Parens (Ed.) (2006) p. 60 25 Lantos, J. (2007) p. 6
Against the Grain:
The Evolution and Expansion of Neonatal Intensive Care
This chapter explores the causes and increasing prevalence of premature births, available histories of prematurity and the establishment of the high-tech neonatal intensive care in modern day NICUs, with a particular focus on the evolution of neonatology in American and Canadian contexts. By way of exploring changing and correlative trends in premature birthing and neonatal intensive care practices, this chapter considers two inter-related possibilities; first, that the increasing prevalence of premature births may related to changing reproductive technologies and maternal care practices and second, that the neonatal intensive care industry is both the cause and effect of the issues it sets out to solve – namely high risk pregnancies and high-risk births.
Neonatology is full of surprising turns, historical and otherwise. It’s often dubious and spectacular history as a side-show spectacle is both curious and telling. This chapter explores neonatology’s unlikely swerve through the early-American sideshow circuit and traces the evolution of the baby-rescue industry through the past century of progress. A critical analysis of medical progress in the field of neonatology raises provocative ethical questions and concerns about neonatology’s growing power today.
In developed countries such as Canada and the United States, medical care over the past 40 years has advanced dramatically so that many more babies are now born in good health, and fewer babies die in their first year of life. Before the 1960s, few problems could be diagnosed in pregnancy and very few treatments could be offered to babies born very early or very ill. Most of these babies would die and
consequently, ethical issues in fetal and neonatal care were less common.”26
Clearly the ethical turmoil is not that neonatology has been successful in lowering the incidence of infant mortality, or that more babies are surviving with the help of medical innovation. These are the undoubted successes of neonatology. So why is there a sudden and growing amount of interest about the “ethics” of neonatology? Ethical tensions are rising because of the differential and unpredictable outcomes of prematurely born babies who receive aggressive medical interventions. Some survivors grow into normal childhoods, and other survivor’s childhoods are overshadowed with significant health sequelae related to their preterm births and rescue. Arguably, disability is the unintended consequence of the exuberant interventions that attempt to intercept babies from more immanent, ‘black or white’ biological rituals: living and dying. Assumedly, if disability weren’t a common outcome for preemies and micropreemies, there would be little, or far less heated debate surrounding the merits of neonatal medicine.
Pointing Fingers: The Prevalence, Prevention and Causes of Premature Births
The prevalence of premature births in most industrialized countries is increasing27, despite the widespread availability of advanced maternal and prenatal care and surveillance programs. There is a wealth of statistical data that traces this trend over the recent past in countries with industrialized health care systems. According to the United States Surgeon General, premature birth rates increased from 9% of total births in the United States in 1980 to 12% of total births in 2002. The increasing prevalence of preterm birth rates is significant. According to national vital statistics, since the early 1980s, preterm
26 The Nuffield Council on Bioethics (2006) p.33
birth rates have increased by 36%.28 Low birth weight rates continue to rise, as well.29 Subsequently, National Vital Statistics demonstrate that the trend has continued. In 2006, the preterm birth rate rose to 12.8% of births.30 As such, preterm birth is considered a growing health problem in the United States.31 A similar increase in Canada’s preterm birth rate has been reported by the Canadian Perinatal Surveillance Program. The 2003 Canadian Perinatal Health Report suggests that rates of preterm births have steadily increased from 6.6% of live births in 1991 to 7.6% of live births in 2000.32 Data available in the 2008 Edition of the Canadian Perinatal Health Report shows that the preterm birth rate has increased from 7% of live births in 1995 to 8.2% of all live births in 2004.33 The trend continues. Figure 1.1 illustrates the steadily increasing rate of preterm birth in Canada, per 100 live births over a ten year span. The Canadian Perinatal Report also shows that the preterm birth rate of twins is 57% and that 96.1% of higher order multiple births are born premature. The highest preterm birth rate in Canada is in Nunavut, where 12.2% of all live births are considered preterm. Increasing rates of prematurity are being met with increasingly heroic or aggressive measures and medical interventions that aim to save younger and smaller babies from otherwise immanent death. Prematurity continues to be the leading cause of infant death, disability and obstetric intervention in Canada and the United States.
28 Martin, J.A. (2008) p.17 29 Martin, J.A. (2008) p.18 30 Martin, J.A. (2008) p.17 31 Carmona, R. H. (2003)
32 Canadian Perinatal Health Report (2003) p.123 33 Canadian Perinatal Health Report (2008) p.123
FIGURE 1.1 - RATE OF PRETERM BIRTH IN CANADA (1995 to 2004)34 **per 100 live births
Born in 1985, a baby weighing less than 500 grams at 22 weeks of completed gestation would have been considered stillborn. Born today, this baby will likely be born ‘live’, become the beneficiary of ‘extra-heroic’ medical interventions, and enter into the strange, ethical and medical fracas known as the Neonatal Intensive Care Unit – the NICU. Born today, this baby would have a reasonable chance of survival. For this new category, created for babies who’ve breached the boundaries of biological possibility, survival rates continue to improve. Since 1985, the neonatal death rate in Canada has been reduced by half.35 Rising rates of prematurity may also be related to the industry trend to resurrect more babies that would not be considered “viable” (read: livable) even a few years ago. Premature babies are now being resuscitated as early as 20-21 weeks of gestational age in some NICUs, at the discretion of practitioners and parents and in the absence of binding legislation and regulations that
34 This data does not include preterm birth rates from Ontario. Figures based on Vital Statistics are available in the Canadian
Perinatal Health Report (2008 Edition) p.124
clearly delineate the viability of babies born too soon.
Confounding the possibility of establishing clear parameters around “viability” is a quagmire of therapeutic and late term abortion policy and litigation. Most developed countries establish the legal limit for therapeutic late term abortions at 24 weeks of completed gestational term. This means that aggressive neonatal interventions are salvaging babies born weeks before the limit of viability dictated by policy and law relating to late-term abortion and therapeutic termination procedures. The possibility of establishing a clear biological limit of viability is dubious. Partly because there is no clear limit in legislation, regulations or law, the limits continue to be pushed. Babies that are born 147 days into a 280 day pregnancy are being resuscitated and sustained outside of the womb, with varying rates of survival. By continuing to push the threshold of viability, neonatology has created more of an industry of child-rescue for itself. So, it may not simply be that the prevalence of premature birth is increasing, but that an unfettered neonatal industry, lacking guidance on a clearly defined ‘limit’ to viability, continues to push the boundaries by routinely resuscitating greater numbers of younger and smaller babies.36
The established standard of practice in neonatal care today (in North America and abroad), is to resuscitate babies who are borderline, survey their progress, wait for the baby to ‘declare themselves’ as viable and ‘intact’ after initial technological intervention. Once declared intact and viable, practitioners and families make a decision whether or not to continue with or cease treatment.37 In the best interests of identifying causes and prevention strategies for premature birth trends, critical reflection of the health
36 Miller, G. (2007) p. 24
37 The Fetus and Newborn Committee of the Canadian Paediatric Society and the Maternal-Fetal Medicine Committee of the
Society of Obstetricians and Gynecologists of Canada recommends that fetuses born prior to 22 weeks of completed gestation are not viable. Those born at 22 weeks are rarely viable. There is a high degree of viability with fetuses delivered between 23 and 24 weeks of completed gestation. See G. Miller (2007) p. 106-107. This is in keeping with established international guidelines for neonatal resuscitation which suggests 23 weeks of completed gestation serve as the cut-off threshold for determining which babies should receive aggressive medical interventions. Resuscitation, it has been argued, has become the preferred response in the delivery room, as it does not necessarily mandate continued support. See G. Miller (2007) p. 127.
industry as a whole needs to take place. The routinization of neonatal resuscitation for borderline babies might contribute to the increasing prevalence of premature birth and extreme prematurity. By creating its own demand, the industry might be conditioning an expansionist future towards some ill-articulated goal in the name of medical ‘progress’. Where is this all heading?
What forces babies from the womb too soon? “Today, when families ask why their baby was born early, most of the time, the only answer the doctor can give is…we don’t know.”38
This may be an oversimplification. Prematurity is considered to have a multifactorial etiology.39 Put simply, there are multiple and sometimes inter-related causes of preterm birth which make it difficult to provide a single and precise reason. The known and suspected causes are social, environmental, biological and systemic. Family history of prematurity seems to be the best predictor of premature labor, which is associated with short cervical length, which is, in turn, associated with shortened gestational term.40 ‘Incompetent’ cervix is a commonly diagnosed condition which may result in preterm labor. Both short cervical length and ‘incompetent’ cervix are thought to be genetically inherited traits, although women who have been surgically treated for cervical cancer or pre-cancerous viral cells may develop one or both of these characteristics. Maternal infection, Placentia Previa and preeclampsia are high risk conditions that often result in spontaneous labor or early, emergency induction of premature labor. Other important risk factors may include; severe dehydration, stress, low body weight or malnutrition, history of abortion, smoking, environmental causes, or drug abuse. 41 The link between advanced maternal age and premature labor and delivery has also been well-established.424344
38 Carnona, R.H. (2003)
39 Canadian Perinatal Health Report (2008) p.123 40
National Institute of Child Health and Human Development (2001)
41 Canadian Public Health Agency, “Canadian Perinatal Health Report (2003) p. 73 42 Miller, G. (2007) p. 196
There is some emergent evidence to suggest that rising rates of preterm birth may be related to increasing levels of exposure to plasticizing chemicals found in everyday products. For example, chemical plasticizers known as phthalates are under investigation by the FDA and Health Canada to determine the extent to which high exposures cause teratogenic outcomes and reproductive toxicity. Phthalates such as di(2-ethylhexyl) phthalate (DEHP) and Bisphenol A (BPA) are plasticizers commonly used to create durable and flexible pvc piping, vinyl, medical equipment, epoxy, toys, plastic containers and other common items. Exposure to phthalates is universal to all humans. Although the general adult population is not deemed to be at high risk for toxicity, there are particular groups that experience elevated risks including pregnant women, infant and pediatric patients. Neonate, infant and pediatric patient groups are highly exposed to DEHP in medical equipment during common medical procedures including: respiratory therapy, total parenteral nutrition, ventilation, blood transfusions, catheterization, etc.45 Health Canada and the US Food and Drug Administration both report concerning evidence that male patient groups, in particular, are being overly medically exposed to plasticizing chemicals found in common medical equipment and could be at risk of acquiring testicular toxicity.4647 Male neonates and pediatric groups are particularly at-risk. There is some evidence to suggest that toxicity caused by plasticizing phthalates may be related to toxicity-induced late term miscarriages resulting in live premature births, especially among male babies.48 According to researchers Latini, et
44
Public Health Agency of Canada “Make Every Mother and Child Count: A Report on Maternal and Child Health in Canada” (2005) p. 6
45 Medical Devices Bureau, Therapeutic Products Directorate, Health Products & Foods Branch, Health Canada. DEHP in
Medical Devices: An Exposure and Toxicity Assessment. Draft Report. Ottawa, Canada (Revised, February, 2002).
46
US Food and Drug Administration, Center for Devices and Radiological Health. Safety Assessment of
Di(2-ethylhexyl)phthalate (DEHP) Released from PVC Medical Devices. Rockville, MD: Center for Devices and Radiological Health; 2001
47
Medical Devices Bureau, Therapeutic Products Directorate, Health Products & Foods Branch. Health Canada. DEHP in Medical Devices: An Exposure and Toxicity Assessment. Draft Report. Ottawa, Canada (Revised, February, 2002).
48 deGuerre, Marc (Prod.) “The Disappearing Male.” (2008). Available at:
al., as many as 88% of newborn cord blood samples contain DEHP or its active toxic metabolite MEHP.49 Their research also establishes an important link between phthalate toxicity and preterm birth. The unintended consequences of manufacturing an increasingly synthetic world may be toxic.
Much research is devoted to linking poor maternal socioeconomic status to premature labor.5051 Geoffrey Miller claims that, “those [women] with lower socioeconomic status were at higher risk for a poor perinatal outcome. There is a strong association between preterm birth and social disadvantage.” 52
The preterm delivery rate is nearly double in the United States than in Canada or Western Europe.53 Arguably, this trend is indicative of systemic causes of preterm birth patterns. Interestingly, Miller doesn’t associate a ‘poor’ maternal socioeconomic profile to endemic health disparities and fettered access to quality medical care for disadvantaged populations as risk factors for preterm birth in the context of the American healthcare industry.
The often studied link between socioeconomic status and preterm labor has resulted in a barrage of maternal education campaigns, health literacy programs, and greater medical surveillance programs in the United States and Canada. Yet, neither maternal education campaigns, nor total medical surveillance (for those who have access) will effectively change the underlying economy of disparity and exclusion that exist within the American health system, in particular. Exclusion from basic prenatal health care on the merits of socioeconomic disadvantage contributes to the incidence of preterm birth by creating economic barriers to securing healthier pregnancies. Curiously, with regards to premature births, it is “almost as if society, by some mechanism, were working against health, and medicine were
49 Latini, G. et al. (2003)
50 Lantos, J. , W. Silverman and G. Miller (2007) p. 196 51
Public Health Agency of Canada “Make Every Mother and Child Count: A Report on Maternal and Child Health in Canada” (2005) p. 5
52 Miller, G. (2007) p. 196 53 Miller, G. (2007) p. 196
then working against the rest of society, separately trying to patch the wounds caused by some nameless thing that forces babies from the womb too soon.”54
Rates of preterm birth and infant mortality rates are also organized around racialized categories. In the United States, for instance, “mortality rates for black infants is twice as high as that for whites and there are similar differentials within the white population: the highest rates are found among those on the lowest rungs of the socio-economic ladder.”55 Likewise, the correlation between social disadvantage and preterm birth, as well as Aboriginal status and preterm birth has been established in Canada.56 According to the Canadian Perinatal Surveillance System in 2000, the preterm delivery rate in Nunavut (with a predominantly Aboriginal population) is 10.6% compared to the national average of 7.6% of total live births.57 These trends are often met with maternal education campaigns, which associate the ‘problem’ of preterm birth as an event caused by particular individual characteristics and circumstances rather than a symptom of systemic health inequities. In the U.S.A., for instance, campaigns to prevent premature birth are targeted at vilified, often racialized mothers, through maternal education programs rather than acknowledging the exclusionary effect of the health system which awards access to health on the merits of ‘capital’ and, subsequently, ‘race’.
It is therefore necessary to consider possible systemic reasons for rising preterm birth rates. Socio-economic disadvantage and manufactured health disparities create differential access to adequate medical care between different groups. Why is it that the highest rates of preterm birthing occur in North American Indian58, Inuit59 and African American pregnancies60? These trends are unexplained by
54
Lantos, J. (2001) p. 119
55 Silverman, W. (1998) p. 72
56 Public Health Agency of Canada “Make Every Mother and Child Count: A Report on Maternal and Child Health in
Canada” (2005) p. 6
57 Public Health Agency of Canada, “The Canadian Perinatal Health Report” (2003) p. 73 58 Public Health Agency of Canada, The Canadian Perinatal Health Report” (2008) p.224 59 Public Health Agency of Canada, The Canadian Perinatal Health Report” (2008) p.224
existing research61 and further research is required to explain this phenomenon in both Canada and the United States. First, it might be productive to explore the correlation between preterm birth rates and poverty amongst North American Indian, Inuit and African American mothers, in particular. Second, it might be productive to consider the correlation between preterm birth rates and the availability/accessibility of quality medical care for North American Indian, Inuit, and African American mothers. It may be significant that lower rates of preterm birth occur in Canada, as compared to the Unites States. What accounts for this difference? It’s possible that marginalized socio-economic groups in Canada have better access to a medical care system than their American counterparts. The Canadian Public Health Agency recognizes that although health disparities exist in Canada, universal access to health services mean that pregnant women receive high quality maternal care.62
Causes for rising rates of prematurity may be due, in part, to social reasons. Health policies, public health prevention strategies, prenatal health literacy and education campaigns have largely mobilized around the social problematization of marginalized groups and women: African American and American Indian mothers63, single parents and working mothers64, remote, traditional Aboriginal mothers65, teenage mothers66, the economically disadvantaged or those with low education levels67. Interestingly, despite known risks associated with pregnancy during advanced maternal age, the increasing use and availability of Advanced Reproductive Technologies, and the increasing prevalence of multiple births, educational campaigns continue to target socially problematized individuals and
60 Martin, J.A., et al. (2009) p.18 61 Goldenburg, Robert, et al. (2008) p.80 62
Public Health Agency of Canada, “Make Every Mother and Child Count: A Report on Maternal and Child Health in Canada (2005) p.7
63 Carmona, R. (2003) and Public Health Agency of Canada “Canadian Perinatal Health Report, 2003” (2003) p. 73 64
Public Health Agency of Canada, “Canadian Perinatal Health Report” (2003) p. 73
65 Public Health Agency of Canada, “Canadian Perinatal Health Report” (2003) p. 73 66 Public Health Agency of Canada, “Canadian Perinatal Health Report” (2003) p. 17 67 Public Health Agency of Canada, “Canadian Perinatal Health Report” (2003) p. xi
groups rather than women with advanced maternal age, or the growing number of couples who actively seek out various methods of artificial conception. Generally speaking, there is widespread public acceptance of the trend to have babies later in life and a greater acceptance of artificially conceived pregnancies. In the thrust of biomedical progress and achievement, the industry has yet to turn a serious critical eye on its own complicity in rising rates of prematurity via high-tech infertility treatments and aggressive obstetric and neonatal interventions.
The growing prevalence of Advanced Reproductive Technologies and Assistive Reproductive Technologies (ARTs) are not only responding to rising rates of infertility, but they may also fuel the growing rate of premature birth.68 Among other contributing factors, research conducted by Robert Goldenburg (et. al.) relate high rates of preterm delivery with artificially conceived pregnancies.69 The Public Health Agency of Canada reports that the use of assisted conception methods has resulted in both rising rates of multiple births and rising rates of premature birth in Canada.70 In response to expounding rates of medically intervened and assisted procreation, the Canadian government is currently developing regulations around the use of ARTs, but in the meantime, reproductive legislation is uncertain. Commonly used Assistive Reproductive Technologies include invitro fertilization, egg implantation, and the use of fertility drugs, but the term includes all procedures that help people build their families.71 Often, the use of ARTs results in the fertilization of multiple eggs. Multiple eggs yield
68 Among other Advanced and Assistive Reproductive technologies, in vitro fertilization, egg implantation and the use of
fertility drugs are doubly associated with multiple births and prematurity. In 2006, Assisted by fertility drugs, Canada’s first known sextuplets were born to an anonymous couple after the parents “refused selective reduction, which would have terminated some fetuses to improve the chances of the others.” The six babies were born at 24 weeks gestation, two of whom died within a week. The case was cause for much media attention due to the couple’s refusal of blood transfusions for their six children, based on their spiritual beliefs as Jehovah’s Witnesses. See Dyer, Owen (2007).
69
Goldenburg, Robert, et al. (2008) pp. 74
70 Public Health Agency of Canada, “Make Every Mother and Child Count: A Report on Maternal and Child Health in
Canada (2005) p.6
multiple births. These pregnancies account for a large proportion of preterm births.72 In 2006, researchers report that more than 30% of pregnancies that used ARTs resulted in twins or higher order multiple births in Canada.73 The high-risk nature of prematurity is well established in Canada, where prematurity is the primary cause of infant morbidity and disability. Over 70% of neonatal deaths and 75% of neonatal morbidity are associated with prematurity.74 This trend is magnified amongst pregnancies of twins and multiples and rising rates of multiple births created by ARTs. More than half of neonates born through ARTs are multiple order births.75 Perinatal mortality rates are four times greater amongst twins and six times greater amongst higher order multiple births, as compared to singleton births.76 Furthermore, the prevalence of cerebral palsy (and other health sequelae) associated with prematurely-born multiple births follow similar trends.77 Research exploring the complex relationship between ART, multiple births, prematurity, neonatal death and neonatal morbidity are raising new questions about the safety, efficacy and ethics of ARTs, underscoring the drive for policy development in this area.
In the United States of America, the Department of Health and Human Services and the Centers for Disease Control and Prevention report increasing prevalence of pregnancies that involve ART, and a correlative increasing prevalence of twin and multiple births.78 In 2008, 3.2% of live births in the United States were twins or multiple births. Rising rates of twin and multiple births are associated with increased use of assistive human reproductive technologies. The 2005 Assisted Reproductive
72 Public Health Agency of Canada “Make Every Mother and Child Count: A Report on Maternal and Child Health in
Canada” (2005) p. 5
73
Basatemur, E., and A. Sutcliffe (2008) in J. Cook, et al. (2011) p.610
74 Wen, SW, et al (2004) cited in J. Cook, et al. (2011) p.610 75 Sutcliffe, A. and M. Ludwig (2007) in J. Cook, et al. (2011) p.610 76
Wimalasundera, RC, et al. (2003) cited in J. Cook, et al. (2011) p.610
77 Scher, AI, et al. (2002) cited in n J. Cook, et al. (2011) p.610
78 2005 Assisted Reproductive Technology Report: National Summary, published by the Department of Health and Human
Technology (ART) Report states that up to 32.9% of pregnancies which involved ART resulted in pregnancies with twins and as many as 4.4% of assisted pregnancies resulted in the birth of triplets or higher order multiple births. These figures represent a dramatic increase in: the number of medically manufactured twin births, multiple births, and both live multiple births and unsuccessful multiple births at a national level. They also reflect a growing demographic of high-risk babies being born each year. Nationally, the overall number of ART assisted pregnancies involving women over the age of 35 are also significantly increasing, according to the report.
The same trend can be found in Canada where the birth rate of multiples has risen to 3% of all births, according to the Canadian Perinatal Health Report, 2008.79 Canada, along with the United States has one of the highest rates of multiple births, globally. Advances and increasing access to Advanced Reproductive Technologies and assisted procreation has resulted in an interesting paradox. Paradoxically, in order to ‘fix’ high-risk or difficult pregnancies, more high-risk babies have to be born.
The use of fertility drugs resulting in the live births of octuplets born in California at 30 weeks gestation in January of 2009 has recently brought to the fore some of the ethical dilemmas associated with widely available, state funded fertility treatments. The prematurely born Californian octuplets are only the second set of eight babies, born at the same time, to complete such a lengthy gestation, survive more than a few hours and experience relatively minimal medical intervention. Of Canada’s first sextuplets, born at 25-weeks of gestation in Vancouver in January of 2007, two died.80 The California case is currently under investigation by the California Medical Board. The heightened risks of death, disability and health sequelae associated with prematurity, combined with a near non-existent policy framework are bringing the unbridled use of ARTs into question in many countries. Infertility
79 Public Health Agency of Canada, The Canadian Perinatal Health Report (2008)
treatments and the role of fertility clinics have redefined the very terms of human procreation, leaving ethicists to navigate the mire of questions which ARTs provoke. Should fertility treatments be publicly funded? Are they worth the ‘risk’? Does the treatment of infertility respond to the state-given ‘right to bear children’? What are the consequences and unintended consequences of redefining human procreation?
Existing data about the phenomenon of rising preterm birth rates reveals multiple and interconnected trends; rising rates of multiple births associated with ARTs, underlying health disparities, differential access to health care services, environmental causes, and toxicity. Available statistical data provides a clear picture of recent preterm birth trends in industrialized countries such as Canada and the United States. Associated with growing rates of prematurity and rising rates of multiple births in Canada, the Canadian Institute for Health Information reports that a growing number of babies are being born below 2500 grams.81 It’s important to recognize the limitations of existing statistical data, however. Rising rates of prematurity are not a new phenomenon and may even be historically insignificant in consideration of the transformation of birthing, human reproduction, and medical practices over centuries. Presumably preterm birth rates have been rising for a much longer continuum, as birthing practices have transformed and infant mortality rates have improved. There is not adequate comparable data of preterm birth rates prior to 1980. Current data provides little opportunity for comparative or far-reaching historical analysis. For instance, there is limited comparable data available on preterm birth rates in countries with less developed health services and medical care. It’s important to acknowledge the limited usefulness of available literature on prematurity and statistical trends.
So, in some ways, existing data about rising preterm birth rates and changing medical practices is
81 CIHI data (2008-2009), cited in J. Zin, et al., Prevention of Multiple Births Associated with Infertility Treatments: A
